- Neurology
- Cognitive Assessment
- Education
- by The Memory Exam Team
- Dec. 15, 2025
Most people who could take part in Alzheimer's research never do. The reasons are practical, and they shape who the results apply to.
Fewer than one in ten people who could take part in an Alzheimer's clinical study actually do. Among people from underserved and minority communities, the share is lower still. That has been documented for well over a decade, and it is the quiet reason progress in this field is slower than it needs to be.
Why Do So Few People Take Part?
Very little of it is lack of willingness. The barriers are ordinary ones:
- Studies run at academic centers that are a long drive away, during working hours.
- Nobody mentions them. Most people hear about research from their own doctor, and most doctors are not running studies.
- Stigma. Volunteering for a memory study means saying out loud that memory is on your mind.
- For many families, a well-founded distrust of medical research, and materials that were never written with them in mind.
Why Does It Matter Who Takes Part?
Because a study can only describe the people in it.
This matters most for studies that set the reference values other tests are judged against. If the people who took part were mostly younger, mostly more educated and mostly from one background, then the "normal range" that comes out of it fits that group and fits everyone else less well. The result is a test that reads some people as impaired when they are not, and reassures others when it should not.
Broad enrollment is not a courtesy. It is what makes the numbers mean anything.
What Does Taking Part Usually Involve?
Less than people expect. Many studies in this area are observational, which means nobody is given a drug and nothing about your medical care changes. You do some testing, and the researchers learn from the results.
Our own normative study is one of these. It is a single online session of about half an hour, done from home, with no treatment and no follow-up required. Its whole purpose is to establish what normal performance looks like across ages, so that everyone's result can be read fairly.
Where Can You Look?
Studies recruiting near you are listed publicly, and asking your own doctor is still the most reliable route. If you want to see what we are running at the moment, it is described on our volunteer page.
Where This Information Comes From
Grill JD, Karlawish J. Addressing the challenges to successful recruitment and retention in Alzheimer's disease clinical trials. Alzheimer's Research and Therapy 2010;2(6):34. doi:10.1186/alzrt58
The community recruitment model described here was presented by Dr. Gregory Sahagian at Clinical Trials on Alzheimer's Disease, San Diego, December 2025. He is Chief Scientific Officer at Profound Research, which runs clinical trials within community neurology practices.